Editor’s note: This story first appeared on palabra, the digital news site by the National Association of Hispanic Journalists.

By Tina Vasquez

I was part of the wave of people who opted for a long-acting reversible contraceptive (LARC) in the days leading up to the election of Donald Trump. The reasons many of us clamored for these intrauterine devices (IUD) and birth control implants were simple: research shows some of these methods may be more effective than permanent sterilization, and the incoming administration had signaled its intent to undermine access to birth control.

I don’t remember how I first heard about the implant. What I do remember is that one, Nexplanon, was marketed as a form of get-it-and-forget-it birth control that helps people stay child-free for years. My health insurance made Nexplanon free and the insertion at Planned Parenthood — just a small incision in my arm — was easy and painless.

Nexplanon was especially easy for me to get-and-forget because there was never a time I could see or feel the matchstick-sized rod, something my provider should have warned me about while showing me how to “palpate” the implant. Spoiler alert: She did neither, which ultimately led to an expensive surgery and thousands of dollars in medical debt.

I reached out to Planned Parenthood multiple times for this reporting, including a request for the organization to outline its practices for Nexplanon insertions. Planned Parenthood did not respond. The nine-part Nexplanon explainer on the organization’s website doesn’t mention anything about palpating the implant, and it appears to downplay any potential negative side effects. It states, “Side effects aren’t always a bad thing,” and that many people use the implant because side effects, like easing cramps and PMS and making periods lighter, “can be really helpful.”

I decided to pursue this reporting because in the months since the Supreme Court’s ruling in Dobbs v. Jackson Women’s Health Organization that eliminated the constitutional right to abortion, the demand for LARCs has increased. In the coming years, these products are expected to drive the growth of the multibillion dollar U.S. contraceptive market.

Nexplanon is a market leader. The subdermal implant is manufactured by Organon, a $6.5 billion global pharmaceutical company that formed through a spinoff from Merck & Co. In August 2021, Organon touted Nexplanon as the No. @ contraceptive worldwide by revenue and a product with “blockbuster potential.”

There is a lot I wish I’d known before getting an implant, and my pricey and exhausting experience has left me concerned about how gaps in information can harm patients, especially low-income women of color who are often funneled toward implants like Nexplanon.

My experience also speaks to larger issues regarding LARCs and the treatment of patients in the reproductive healthcare system, according to Marissa Billowitz, an independent consultant based in Mexico who has worked for decades with non-governmental organizations on these fronts. “Women deserve all the information possible when it comes to making a decision about contraceptives,” Billowitz said. “If you don’t know what the pros and cons are, how can you make an informed decision?”

Communication breakdown

Getting my Nexplanon inserted was simple, including booking the appointment through the Planned Parenthood website. But things went wrong almost immediately.

For example, the medical device card the doctor provided when the implant was inserted noted the three-year removal date as Nov. 2, 2020 — four years later. No one at the clinic explained the discrepancy, and I didn’t notice it for months. I looked up information from the Food and Drug Administration (FDA) that said, indeed, Nexplanon should be removed after three years. I called Planned Parenthood for clarification. After a few days of phone tag, a provider explained there was “new research” about the implant’s efficacy, which is why the removal date was pushed to four years. (A video about Nexplanon on Planned Parenthood’s website says the implant protects against pregnancy “for up to five years.”)

But when I returned to Planned Parenthood four years later to have the implant removed, I didn’t even make it inside the clinic before I was turned away. A woman stopped me outside, identified herself as a provider, confirmed my identity, and then told me to go home. The implant could now last up to five years, she said. Why, then, does the FDA — and even Organon itself — continue to recommend a three-year limit on the Nexplanon implant?

“We are continuing to get new data, but it’s not OK to assume all patients are aware that as we get new data, the timeline they were originally told about the implant may change,” said Dr. Nisha Verma, an OB/GYN, abortion care provider, and the Darney-Landy Fellow at the American College of Obstetricians and Gynecologists (ACOG), the premier professional membership organization for obstetrician–gynecologists. “You have to talk through these changes with patients; otherwise, it can be confusing. I always tell people that Nexplanon is FDA-approved for three years and we have strong data that it’s effective for five years for people with a normal BMI and up to four years for people with an elevated BMI.”

Records I obtained through a Freedom of Information Act request suggest I’m not the only person confused by Planned Parenthood’s information. In 2017, a woman in New York called to express concern about the information that Planned Parenthood provides to patients regarding Nexplanon, according to a whistleblower complaint from the FDA’s Office of Regulatory Affairs. The crux of her complaint was that the prescribing guidelines for Nexplanon differed from the guidelines provided by Planned Parenthood. “The information is conflicting,” the whistleblower report said. “Complainant advised that if not corrected, the effect could be a rise in unplanned pregnancy if patients adhere to the four years and not the prescribed three years.”

In an emailed statement, a spokesperson for Organon shared the FDA-approved prescribing information for Nexplanon and reiterated that the implant “must be removed by the end of the third year.” A current study to assess the efficacy and safety of Nexplanon during extended use beyond three years will be completed in the summer of 2024.

There are at least six sizable Facebook groups devoted to Nexplanon that, when combined, contain nearly 30,000 members. I turned to these groups as a form of support. I learned that over the years, a number of members have posted questions and complaints regarding the Nexplanon information they received from Planned Parenthood. In 2020, a woman posted her Nexplanon medical device card that lists the insertion date and the date the implant should be removed. On the card, the provider wrote the number four over the number three in “three year removal date.” In her post, the woman wrote, “Anyone had this happen?” While I didn’t reach out to these patients to verify each of their claims, their experiences mirrored my own.

In my particular case, unclear communication soon became the least of my concerns.

Migrations

Fast forward to November 2021. I’m back at Planned Parenthood after five years to have my implant removed. The provider spent about 25 minutes inching her fingers along my left inner bicep before admitting defeat. I’d have to go “somewhere else” to have the implant removed because Planned Parenthood couldn’t provide an X-ray or ultrasound, she said, without much explanation. The provider also told me not to worry about pregnancy because women in “third world countries” successfully use Nexplanon for up to seven years.

OB/GYNs I spoke to said these migrations — defined as movement of the implant at least 2 cm beyond the site of insertion — are likely the result of the implant being inserted too deeply. Doctors assured me migrations occur in less than 2% of patients, but it’s a high enough percentage that Organon updated its Nexplanon label in 2016 to warn of the risk. I was also told that providers such as Planned Parenthood are trained to insert and remove implants; however, mine was considered a difficult removal that could not be performed as part of a regular office visit.

Over the years, issues related to Planned Parenthood insertions and removals have come up regularly in Facebook groups. In August 2019, two different women posted about implants inserted by Planned Parenthood that got “lost” in their arms. In the case of a California woman, the migration occurred a week after insertion. The timeline of the second case is unclear, but the Planned Parenthood patient posted a photo of her bleeding arm appearing to show two different incisions apparently made by a provider in search of the implant.

Planned Parenthood did not respond to repeated interview requests regarding the number of implants the organization inserts and removes each year, whether any clinics offer X-rays or ultrasounds for patients whose implants have migrated, or information regarding any assistance offered to uninsured patients whose implants must be surgically removed, among other questions.

Informed consent

As a journalist, I’m ashamed by how little I researched Nexplanon before choosing the implant and how few questions I asked my provider, who failed to inform me of the risks and potential complications associated with the contraceptive. Billowitz reminded me that the burden isn’t on patients to be experts on contraceptives. Plus, the reasons providers don’t always give patients the information they need can be complicated. Besides the well-documented structural issues in the healthcare system, there are other factors that can hinder providers at high-volume clinics from providing quality care. They are often overscheduled and have limited time with patients, for example. But sometimes providers aren’t doing their jobs.

“Even if a provider only has 10 minutes with you, under no circumstances should they deny a patient the full information they are owed,” Billowitz said. “When a woman walks out of the exam room, she should know about the potential side effects of a contraceptive or what the potential adverse events could be.”

Things become murky when this crucial information isn’t provided to patients, Billowitz said. If you’re not counseled on what you’re signing up for when choosing a contraceptive, is it informed consent?

Organon and its parent company, Merck, are also failing patients, according to Angela Lauderdale, a longtime Tyson Foods employee from Arkansas. When Lauderdale’s 18-year-old daughter, Addison Cook, said she was considering using contraception for the first time, Lauderdale agreed. The Fayetteville, Arkansas, teen was a busy high school senior gearing up to be the first in her family to go to college. She was a member of the National Honor Society, an Honor Roll student, and an editor for her school yearbook.

Lauderdale said Cook became interested in Nexplanon because a friend said it could shorten the length of her period. Choosing a birth control method always seemed “pretty routine,” Lauderdale said, so she didn’t think much of her daughter’s decision. The teenager’s implant was inserted March 21, 2019, by Lauderdale’s gynecologist. Nine months later, Cook died from pulmonary embolism and cardiac arrest. She was 19.

“She was fine, and then she wasn’t,” Lauderdale said in a phone interview.

On Dec. 6, 2019, Cook went to the hospital experiencing chest pain and shortness of breath. She was diagnosed with pulmonary embolism and infarction, a form of acute right heart failure, and respiratory failure. Cook’s condition improved and she was discharged on Dec. 10. But before long, she was rushed back to the hospital by ambulance after experiencing shortness of breath, low oxygen saturation, and nausea. Cook was admitted to intensive care. Lauderdale said she still had “complete belief” her daughter would get better. “The night before she passed, she was in great spirits,” Lauderdale said. “I believed it was just a matter of getting the blood clots treated.”

On Dec. 17, 2019, Lauderdale was in the room when Cook’s breathing stopped. A nurse escorted Lauderdale out as a team wheeled in a crash cart. Within minutes, a chaplain appeared to pray with Lauderdale. “There’s something very different about when you pray for your child’s life to be spared,” she said. “It’s a different kind of prayer.”

According to the Mayo Clinic, pulmonary embolism occurs when a blood clot gets stuck in an artery in the lung, blocking blood flow to part of the lung. Blood clots most often start in the legs and travel up through the right side of the heart and into the lungs. This is called deep vein thrombosis (DVT) and it’s what happened to Cook.

In August 2015, the FDA updated the Nexplanon label to warn of the risk of blood clots after the agency received reports of pulmonary embolism, deep vein thrombosis, heart attack and stroke. But Lauderdale is suing Organon and Merck, alleging that critical safety warnings are still absent from Nexplanon’s U.S. product label, including the increased risk of DVT in obese women and African Americans, populations to which her daughter belonged.

Lauderdale’s original complaint makes note of Organon’s “misleading marketing campaign” featuring “attractive, fit, and healthy women.” Absent from advertisements are “any appreciable disclosure of the increased risk of injury or death from VTE to African-American or obese women.” The Nexplanon commercial focuses on the active and busy lifestyles of young women. The implant’s spokesperson, actor Vanessa Hudgens, is seen hiking and rushing to movie sets. While Nexplanon’s advertising materials feature Black women, all are thin.

“While Organon cannot comment on pending litigation, we take allegations about our products’ safety seriously, and remain confident in our defense against the allegations in the Lauderdale case,” a company spokesperson said in an emailed statement, also noting that patients can report any safety concerns to the Organon Service Center and to the FDA.

There were two product liability actions pending against Merck in Ohio for cases related to implant migrations of Nexplanon’s predecessor, Implanon. There are also 56 unfiled cases involving Implanon, according to a SEC filing from Organon earlier this year. As of March 31, 2022, there are 18 cases pending outside the United States related to Implanon and Nexplanon.

Appointments for LARCs have been on the rise in Arkansas where Cook died.

Best practices

As patients, we trust our healthcare providers to know what’s best and to give us the information we need to make informed decisions. This is what’s so striking about the Nexplanon Facebook groups. In near-daily posts, women express that if they’d known Nexplanon has the potential to cause weight gain or heavy or excessive menstruation (or no menstruation at all), they would have opted for a different form of contraception. This gives us some insight into how often patients walk away from conversations with providers without even a basic understanding of possible side effects linked to their chosen contraceptive.

Dr. Verma, the OB/GYN and abortion care provider, said that while Nexplanon is a trusted and safe birth control method, providers should counsel every patient about its side effects and risks, no matter how rare. Verma also takes a shared decision-making approach to contraceptive counseling, an approach endorsed by ACOG. The idea behind this approach is that patients are the experts of their own lives and they know what methods will best fit their needs. For example, for some people there are cultural reasons why having a period every month is important. For others, their birth control method needs to be discreet.

“All of these nuances are really important to understand and once I have that information, I go through all of the options, including how it’s inserted, the potential side effects, the potential risks, all of it,” said Verma, who also recommends the website Bedsider for additional facts about birth control.

New York City-based OB/GYN and family planning specialist, Dr. Johana Oviedo, said that during her training, many of her patients were low-income immigrants and other people of color. Oviedo talked her patients through every facet of their care, understanding that some had an inherent distrust of the healthcare system. “Our field has a terrible history of reproductive coercion, forced sterilization, and more. People come in with very reasonable fear,” Oviedo said.

Reproductive injustices aren’t a thing of the past. In the early 2000s there was a “LARC renaissance,” due in part to policymakers’ efforts to make these contraceptives more accessible and affordable. Dr. Oviedo said that overzealous providers still push patients toward Nexplanon because it’s one of the most effective forms of birth control on the market.

“But the most ‘effective method’ isn’t the most important thing to every patient,” Oviedo explained. “Providers aren’t here to push particular methods because of effectiveness. Some people don’t like any contraceptives. Others rely on abortion care or may be ambivalent about becoming pregnant. We need to have conversations with our patients about what’s important to them.”

LARC coercion

The “success” of free or low-cost LARCs has been illustrated through reduced abortion rates, Medicaid savings, and teen birth reductions. These are red flags for reproductive justice advocates, who point to how contraceptives have been used historically by government agencies to control the reproduction of low-income and disabled communities of color. This was the history Denicia Cadena had in mind when she heard of the Colorado Family Planning Initiative, which offered free LARCs to young low-income women in 2008, leading to a nearly 50 percent reduction in teen births. When similar efforts were considered for New Mexico, the reproductive justice organization Bold Futures fought it. At the time, Cadena was the group’s policy director.

Bold Futures worked to expand access to contraception, but they wanted “access at its best.” This is why Cadena developed a training for healthcare providers on LARC coercion. This was difficult and unpopular work. America’s aggressive eugenics campaign was championed as a progressive cause. In Cadena’s experience, well-meaning liberal healthcare professionals didn’t want to hear that their efforts to funnel low-income people of color toward LARCs was a form of population control.

“Everything was about expanding the use of LARCs, but what we wanted to talk about was the methods used to expand the use of LARCs,” Cadena said. “If a clinic only offers LARCs for free and the other contraceptives cost money, that’s coercion. If a provider only talks to you about LARCs and doesn’t ask you what you want or need, that’s coercion. If it’s free and easy to insert an implant, but it’s a lot of money and trouble to get it removed, that’s coercion.”

During trainings on LARC coercion, Cadena created a non-judgemental space for providers to talk through their implicit biases. Sometimes what she heard was hard to stomach. She said that doctors sometimes admitted that they were hesitant to remove recently-inserted LARCs, especially if the patient was young and complained of side effects. The reason? Healthcare institutions incur a cost up to $1,000 to provide a LARC to an uninsured person, and the providers felt the side effects were “minor.”

“Whenever this conversation came up, I reminded providers that the whole point of these implants is that they’re supposed to be reversible,” Cadena said.

Karen, a Texan in her thirties who asked to use her first name only, told me that she chose Nexplanon when she was 19 because she lived in a traditional, socially conservative Latino family. Being young and sexually active was stigmatized. After getting the implant, Karen felt nauseous and dizzy each morning, symptoms that only worsened. She said that she called her clinic repeatedly to complain, but that her provider simply told her that her body needed “time to adjust.” Karen said she had to “fight like hell” to be taken seriously. When phone calls went nowhere, she showed up at the clinic. It took about four months to have the implant removed, she said.

“The whole thing was shocking,” Karen said. “I liked the clinic because it genuinely tried to provide good sexual education and birth control to young people, but I think there’s this belief that young women don’t know their own bodies or what’s good for them.”

This dynamic impacts women of all ages, and it’s a regular topic of conversation in online groups. In recent months, one woman in a motherhood Facebook group alleged that multiple clinics and hospitals turned her away because she didn’t have a “legitimate reason” to have her Nexplanon removed. Another reported that her OB/GYN refused to take hers out before the five-year mark. Some choose to take measures into their own hands. Multiple women in Nexplanon Facebook groups claim to have removed their implants. One posted photos and a play-by-play of her removal. In a post, she wrote that she “didn’t have much of a choice” because she didn’t have insurance or money to visit a clinic.

At what cost?

After Planned Parenthood failed to remove my Nexplanon in November 2021, I was in limbo for months because of Covid. A February 2022 X-ray finally revealed that the implant was still in my arm, but embedded deep near the bone. My March 23 surgery to remove the implant went smoothly, in part because the surgeon was adept at Nexplanon removals. He told me he performs about a dozen of these surgeries each year.

Throughout, I amassed thousands of dollars in debt, even with insurance. And bills continue to arrive, including one in August for more than $1,100. I also missed hours of work due to doctors’ appointments. At one, I told a physician assistant (PA) that my Planned Parenthood provider said it was unlikely I’d get pregnant before my implant was removed. The PA disagreed and instructed me to “double up” on birth control. She prescribed the pill. A few weeks later, an appointment with my primary care physician revealed that the double dose of hormones caused my blood pressure to spike dangerously high.

When I told this story to Cadena, she said this was a sad example of a healthcare provider operating under the assumption that a potential unwanted pregnancy is somehow more catasphrophic than the risk of a stroke. She also said it’s telling that my Nexplanon experience is technically considered a success because I didn’t get pregnant during the five years I had the implant. But at what personal, professional and financial costs?

“Because of the anti-abortion and anti-sexual and reproductive health environment we’ve had to operate in for so long, this culture has developed where we feel like we have to settle for what we get and we can’t publicly critique it,” Cadena said. “Reproductive justice tells us we must operate in the gray areas and have uncomfortable conversations. Our people need this life-saving healthcare and it’s very important that we have standards on that care and that we talk about it when those standards aren’t met. We deserve that.”

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Tina Vasquez is a movement journalist with more than a decade of experience reporting on immigration, reproductive injustice, gender, food, labor, and culture. Her writing has been published by The New York Review of Books, The Washington Post, The Guardian, NPR, and Playboy. She is a 2021 McGraw Center Fellow reporting on back wages owed to migrant farmworkers. She serves on the board of Press On, a Southern journalism collective that strengthens and expands the practice of journalism in service of liberation. Tina splits her time between her family in Southeast Los Angeles and her home in the Piedmont Region of North Carolina.